Friday, January 29, 2010

Words cannot express what I am going through right now.

We were packing getting ready to leave on 30th Jan, the day our VISA expires.

Now I have to decide my next move in the next 24 hours.

Just HOW MUCH MORE TOUGHER can life get? Just HOW MUCH MORE DO I HAVE TO SUFFER?WHEN WHEN WHEN will anything ever be normal in my life again? All I am asking for is NORMAL! Is it too much for me to ask for?

I just want to go to work like everyone else. I just want to fret about the stressful life in Singapore. I just want to stress over my kids' education and I just want to complain that money is never enough. BUT WHY WHY is it so difficult? WHY CANT I be like any other 30 year old woman, worrying about my wrinkles and cellulite? WHY CANT I just grow old and worry about the normal stuff? WHY?

Are 'YOU' intent and determined to make every february the worst month in my LIFE? I was going to spend CNY like any other family rejoicing about the beauty of life? WHY THIS? WHY?

WHY DO I HAVE to have such a tough life? WHY DO YOU HAVE TO MAKE MY INNOCENT GIRL SUFFER like this?!?!?!?!?!?! YOU HAVE NO RIGHT. NONE AT ALL, YOU SICK MONSTER. I HATE YOU SO MUCH. WHY CANT YOU JUST GET OUT of our LIVES FOREVER?!?!?!?!?!?!

GET OUT. STAY AWAY!

I WILL NOT GIVE UP! NEVER! Dont you ever dare to sneak up on us like this ever again! DO YOU HEAR ME? JUST STAY AWAY. PLEASEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE.

Thursday, January 28, 2010

Charmaine did her MRI of the brain on tuesday and MIBG scan yesterday. Its now 930 hrs on thursday morning and she is supposed to be doing her last scans - CT of the chest, abdominal and pelvis.

Dr Kushner just called me on my phone. I've never ever recevied a phone call from him directly. And I heard what I didnt wanted to hear... I had a bad premonition last night and I dont know why. I hate my brain, I do.

He said that they need a bone marrow on her after the CT. I asked him, "Did something turn up wrong yesterday?" He said, "something showed up on her MIBG".

Damnit. I dont know what else to say. I cant continue...

PLEASE PLEASE PLEASE pray for Charmaine! PLEASE. I NEED to CROSS the one year mark FREE of that horrible monster. PLEASE PLEASE PLEASE... Please let yesterday's results be a mistake. Please let her bone marrow be clear. Please let her CT be clear. Please let everything be good. Oh god, HOW CAN YOU DO THIS TO ME NOW!?!?!

Tuesday, January 26, 2010

Hi everyone,

Just a really short and quick update! Its scans week this week. MRI head, MIBG and CT scan for the next three days.

The kids are excited about going home and I am frantically, yet happily packing!Charmaine has quite bad nose bleeding this time around with Accutane. Rushed to hospital last friday because the nose bled for more than 20mins and wouldnt stop.

Today, we had another bout of nose bleed but it wasnt as horrifying as last friday. I am very concerned about her nose during the flight back because the air up there would be even drier. Spoke to doctor but they said they cannot do anything except to apply pressure to nose if it happens. Oh well, why am I not surprised.

Anyway, still tons to be done so I cant write much. I will update everyone of her scan results once I get them. Have explicitly told the doctor and NPs that I NEED to know ALL her RESULTS before I board my plane! And I will of course 'pester' them if I have to, just to know her results. Else I will never leave with a peace of mind!

Wednesday, January 13, 2010

Happy New Year to all my family, friends, benefactor, doctors and nurses, neighbours, ex-colleagues, school mates, old pals, readers and everyone that has crossed paths with me in one way or another. (Importance of each is equal and not by chronological order)

Wherever you are, whatever you are doing, I'm praying that you are happy and healthy.

Another year has passed, another chapter closed, another digit to add to our numerical age.
What does it mean to you? I was asked last December if 2009 Christmas meant any thing different to me compared to previous years' Christmases. If after going through an experience as close as it gets to life and death and yet not be moved, I could hardly think of myself as a human, can I?

I love life and friends would justify that few can beat me to my passion in life. And I am gifted with 2 precious lives, witnessing them growing each day with me... nothing beats that joy. As for death, its not something I take lightly. Not even for mere strangers. Each time I read updates of other neuroblastoma kids who earned their angel wings, or hear about the lost battles of other cancer kids, I will tear and sob and it just gets me more depressed than ever. Hence, I rarely dare to read about what others are enduring because my heart is too weak and my mind always gives way and crumbles down.

I have not been blogging for a long time. One excuse is that the internet connection is kind of crappy. One reason is because I feel numb and uncontrollable sadness always overwhelms me whenever I type. So I rather google about recipes to cook or just simply stay away from my laptop. Whatever it takes to keep that sadness and negativity away.

So back to the new year and what it means to you or me! I welcome 2010 with my 2 lovely babies and 2 very good friends and we kind of slept the countdown away. Haha. Yes, we just spent the 2 days camped in Ray and Orathai's place, doing minimal things except to eat and sleep.

Do you measure the significance of a new year by the milestone to be achieved in that year or by the aging of your numerical age (like I used to do - turning 30 soon!) or just simply the new resolutions to be completed? From this year and the every new year onwards, I measure it by the number of years Charmaine is in remission! And thats the significance of that entire year for me.

Crossing 2010 is no longer about how I am going to have a blast celebrating my 30th birthday. Nor it is about my new IC picture. Neither is it about Jase's Primary 1 registration. It is all about being alive and staying alive as long as possible from 2009! When I awoke to the message tone on my cell once the clock striked 12, I am elated because its 2010 and I have all the people I love surrounding me! I am so obsessed with that 4 digits number that we use as an unit of measurement for a year in human's definition that I wish I can just fast-forward it to 2055 right now! Even at the expense of me aging exponentially. Because it would simply mean that Charmaine is 50 years old and I can maybe start to relax and not be on my toes about her health constantly! By than I would be ermm... 75 years old and closer to my own resting ground perhaps!

Whatever your resolution may be for 2010, please be reminded not to forget about your health and your happiness.

Before I end this short entry, I have some of Charmaine's memorable quotes to share with you and hopefully make your day!

Quote 1:

Char: Mommy, I want to come out first like Jase Jase!
I dont want to be second!!!
I also want to have my birthday before Kor Kor!

Quote 2:
(Both Jase and me are born in the year of Monkey for the chinese zodiac calendar.)

Char: I dont want to be a rooster! I want to be a monkey also! I am a monkey!

Quote 3:
(This happened yesterday night during our dinner at RMH's Dining Room, with one of the staff, Michael whom is black. Char and Michael were having a conversation between themselves away from our table and when I heard Michael saying, "I am borned this way', I knew what my little girl had asked!)

(Imagine my emabarrassment! Thankfully Michael is understanding! Phew! Michael always laughs big time whenever he hears the kids calling him "UNCLE MICHAEL" from afar. I only realised that he was puzzled by the endearment the kids called him. He went to ask a Taiwanese family here, "why do they always call me Uncle? I am not their uncle!" HAHA.)

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Another NB mom in Singapore wrote me this in her email to me and I would like to share this as well...

"If you think about it, we'll always cross the hurdles, be it easily, or with some difficulties, be it alone or with some help from good Samaritans." - B.T.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Elizabeth's dad, George wrote this in his latest updates on her daughter's fight with NB and recounted how a friend whom had just lost his son to Neuroblastoma in Nov '09 is now diagnosed with cancer himself and fighting for his own life barely months after the lose of their son.

"I hate Cancer! Iwatch it affect people as it hits them like a steam roller. It shows no mercy... no regard for feeling or emotions. It does not slow down when you are too tired to fight or to help a loved one fight... it does not care if it is getting in the way of birthdays, holidays... life. It steals lives, precious lives that could have made a much needed change in our world. I have seen it bring out the very best and the very worst in people. To be such a very fundamentally simple malfunction of otherwise normal cells... it complicates even the most innocent of lives in a relentlessly complicated way. It devours joy and normalcy, replacing them with pain, sorrow and loss beyond belief. Be thankful for your life today, for your health and the ones you love..." - George Westberry~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Remember to smile and be happy... A brand new year, lets all start it right!

Sunday, January 10, 2010

A followup article by The New paper .. extracted from Saturday, 26th December 2009.

"Charmaine taken off drug for now

IN OCTOBER this year, Charmaine Lim had to stop her third cycle of 3F8.

THE 3F8 drug which is given intravenously is circulated in the bloodstream until they attach to aneuroblastoma cell. The drug is made from antibodies produced by the white blood cells of mice.Then, the patient’s own immune system will attack and kill the neuroblastoma cell.She had to stop treatment because she developed human anti-mouse antibodies (Hama).

According to the center’s website, once a patient develops Hama, 3F8 treatments are no longer effectivebecause Hama blocks the 3F8 from getting to the cancer cells. Because of this, she had to stop her 3F8 treatmentuntil Hama recedes before resuming treatment, explained her mum, Ms Cynthia Lim.“No one can tell me when treatment can go ahead again, so I’m pretty much living in uncertainty,” she said.

INTHE past five months, her scanty wisps of hair have been replaced with a full-headed pixie crop.

Those previously sparse eyebrows havegrown out, and her formerly frail 13kg frame has filled out by 3 kg.

Smiling sweetly from photographs whichcapture her trick-or-treating during Halloween or playing in the snow, 4-year-old CharmaineLimlooksthe picture of robust health.

But even though the Singaporean child is currently in New York with her mum, 29 andbrother Jase, 5, these aren’t your average holiday snaps of a carefree child.

Charmaine is critically ill with stage four cancer. She is there for treatment that couldpotentially give her anewlease of life. The treatment, which is estimated to cost at least half a million dollars, coulddouble Charmaine’s chances of survival as comparedto if she hadbeen treated locally.

The little girl was diagnosed with neuroblastomathis February. It’s a rare form of cancer that strikes the adrenal glands of infants andchildren.These are the small glands above the kidneys. They control the heart rate and blood pressure,amongother functions.

Just three weeks after her story was first reported in TheNewPaper in June this year, people here raised half a million dollars forthe treatment. Charmaine’s chances of survival could go up from 20 per cent to as much as 50 per centwith treatment at the Memorial Sloan-Kettering Cancer Center in New York, doctors in Singapore said.

Charmaine’s mum, Ms Cynthia Lim, 29, a divorcee, couldn’t afford the treatment as she gave up her project management job at a water treatment company earlier this year after her daughter becameill.The little girl with the winning smile strucka chord in Singapore and many were moved to donate generously –and swiftly.

Over the phone fromNewYork earlier thisweek, Ms Lim told The New Paper: “This gift of life – having Charmaine here to receive the treatment – is the most precious gift for usthis Christmas. “I never imagined the amount of love I could get from people I hardly know.”Christmas this year is extra special for their family, even though they are away from Singapore.If Charmaine hadn’t received any medical treatment, she would have had only “a few monthsto live”, saidMsLim.

While Ms Lim would put up a Christmas tree for her children in the past, the occasion was “never really a big deal” – until this year that is.She said: “All this while, I took it for granted that I will always have my two kids with me.“Now, holding Charmaine and watching her get all excited playing in the snow with her brother, is a giftnomoneycan buy.“I’m eternally grateful to everyone who helped tomakeit possible for me.”

The family plans to do a quiet Christmasdinner with two of Charmaine’s godmothers, who will fly over to celebrate the occasion with them. As Charmaine misses kaya, the local coconutspread, her godmothers will be giving her someas a special treat.

KindnessApart from donations for the treatment,people here have continued to show little acts of kindness to the family even while they are in the Big Apple.

For instance, some members of the Singapore Airlines crew visited the family thrice at their lodging, The Ronald McDonald House,which provides affordable housing near the hospital. Other donors have diligently sent textmessagesto the family checking in on them, whilesomeothers have sent snacks like cuttle fish, cartoon DVDs and lanterns to keep thekids entertained.

The family has also been invited to gatherings like Halloween parties through Singaporeanswho have friends and colleagues in the United States.

Chirpy Charmaine sounded chirpy over thephone when The New Paper spoke to her. She greeted this reporter with a cheery “merry Christmas, happy new year, happy holidays!”

This is the first time she’s seen snow and she’s “of course excited”, she declared loudly.

When The New Paper first met her early this year, shewas shyand reserved. Her daughter’s more outgoing nature is achange,MsLim has observed as well. She told The New Paper that her daughter has become chattier and likes running littleerrandsaround theiraccommodationlike getting toilet paper from the lobby.

The little girl’s life in New York revolves around hospital visits, blood tests, bone marrowbiopsies (where a sample of the bone marrowis taken) and various scans.

Despite the discomfort and pain, Charmainewho refers to the cancer as “the monster”, is trying her best to stay healthy. Ms Lim said: “She will tell me, ‘I don’twant the monster to beat me, I will eat more, I will eat fruits’.”

There has been some positive news sinceCharmaine’s treatment in New York, said Ms Lim. Charmaine’s scans in October, showed that there is no evidence of disease – meaning no new cancer cells have developed.

Traces of old cancer cells, however, still remain on her rib cage, spinal cord and near her heart. While Ms Lim is delighted with that development, her happiness is mixedwith anxiety.That’s because Charmaine has developed resistance to the cancer-combating drug 3F8, which are antibodies produced by the whiteblood cells of mice. (See report, above.)

So far, about half of the amount raised has been used for treatment, even though treatment could take up to a total of two years, Ms Lim said. She plans to take it one step at a time,saying: “For now, we are financially okay, I’m just trying not to think too far ahead for nowthough.” The family will return to Singapore next monthfor ChineseNewYear.

Being reunited during the festive occasionwith her grandparents, both in their 60s, and her uncle in his 20s at their four-room HDB flat in Punggol is something Charmaine islooking forward to. That andher favourite bak kwa, of course.

Thursday, January 7, 2010

Few weeks before, Charmaine had her routine bone marrow test and the result is out.Looks like our princess has been fighting very strongly with the Monster!She is still cleared of cancer cells in her body! (^^)

Some photos that we took during Xmas day.RMH has organized volunteers to come by for a celebration and boy, was it an enjoyable event for the kids!

While our very chinese-meals kids do not really eat much in such event, it was a nice touch by the volunteers to come by the Home in this day.

Thanks!

Charmaine loves her Angel Gingerbread woMan.

All of us where in Santa hats from Dasio and here is our pretty santarina!

.. and she chooses her Princess dress to go along with in this special occasion.

Tuesday, January 5, 2010

Right after all celebrations, Charmaine has her first visit to MSKCC this afternoon for her jabs for seasonal flu and H1N1, alongsidewith her bloodtest on Hama negativityApart from feeling "pain" (sore) on her left arms, she is very much jumping and hopping with Jase.Tmr, MSKCC will inform of whether Charmaine is still on Hama positive, and please pray for her so that she will skip 1 more chemo round and go back straight on the treatment!